Thursday, January 6, 2011

I had my long-anticipated first visit with an Infectious Disease doctor. It went as well as could be expected. He knew a little about CFS, and even less about XMRV. And here I come in, telling him I have CFS and am XMRV positive. What did I expect? That he would turn around and write me a prescription on the spot?

No, of course not. What I expected -- and hoped -- was that he would be open-minded and intellectually curious. Which he was. He gave me a lab requisition to get a baseline, and he told me he would research XMRV before our next appointment, in two weeks. He said he would consider -- CONSIDER -- treating me, based on his findings.

That's all I can ask. I know there is a lot of controversy surrounding treating XMRV. I know that not everyone who tries treatment gets better. I know that it might not work for me. But something in me tells me I have to try, I have to see for myself. If I get better, I am not going to recommend everyone who has tested XMRV positive go out and demand HAART treatment. But I am going to raise my voice like a bullhorn, and let anyone who will listen to me know that something needs to be done. More research. Safer drugs.

It's time to stop sweeping under the rug 4,000,000 people suffering from such a debilitating disease.

13
comments:

The doctor wants to give you 2 weeks, so he can research? That is crazy! I hope, for your sake, that he takes you seriously. I find it funny that I end up knowing more about CFS than the doctors do. Why? Because we're forced to take things in our own hands because the don't offer us any solutions!Sorry, this post just got me all fired up!Speak up for yourself! Hopefully you will have a good update in 2 weeks!

A person needs to listen to their own voice inside...I just wish that doctors would listen to us too...at least he is a bit open...BUT it does not bode well that the man knew little about CFS. Is he the only one available to you? I guess a wait and see attitude needs to come into play until after the second appointment. Does someone go with you as an advocate?We will advocate for you here with prayer!!

Wow, I'm impressed you found an ID willing to do some research! That's a good sign. There are no IDs in Delaware who will treat CFS.

Be cautious with XMRV treatment - there are no studies yet as to which combination of anti-retrovirals will work against XMRV. What I've read so far suggests that the regime used to treat HIV will not work well against XMRV because the two are so different.

I'm eager for XMRV treatments, too - just be careful and research side effects and risks carefully.

Dr. Deckoff Jones has volunteered to hook up with CFSer's ID docs. She's done extensive research in this area. I just want a doc with lots of anti-retroviral experience to monitor typical reactions to the meds. They can confer with my ME/CFS doc, and Dr.Deckoff Jones for the ME/CFS side of things.

Glad you found a doc who is at least open-minded and willing to do research. It's sad to say, but when it comes to CFS, that can be very rare these days. I'll be curious to hear how your next appt goes. Keep us posted!

Dr. Mikovits will report on physicians who are treating XMRV + patients with ART on Jan 17 at Gordon Medical in Santa Rosa CA. Dr. Deckoff-Jones has joined WPI in creating an organization for educating docs and patients who want to try ART.

If it were me, I wouldn't leave the research to my ID doc. I'd go to Dr Deckoff-Jones's blog and print off some of the pertinent papers she lists there. If your doc is like so many others, s/he'll see the headlines, like XMRV is a contamination, and not look farther.

As for the contention that no research has been done on HIV-approved drugs in MLVs and XMRV, at least two such studies have been done. Dr Ila Singh tested 45 HIV drugs and found 3 - AZT, Viread and Isentress - to be effective against those retroviruses, in the lab. There is another study that found 7 HIV drugs, including the original 3, to be effective, in the lab.

The side effects are no worse than those of many other frequently prescribed drugs. Any doc who prescibes them will also do the monitoring, just like one would do for HIV patients taking those drugs.

See this article about Dr D-J and Dr Snyderman, who are docs with CFS and are trying ART:

Amanda, I'm waiting two weeks because I have to get the baseline labs done before I can start any medications. I'm actually glad that he's willing to do research and learn -- it would be pretty irresponsible if he just took my word for it.

Thanks, Judy!

Renee -- I like that he's not a CFS doctor with preconceived ideas. I think that will help him be objective.

Sue -- You bring up some very valid concerns. Some of the side effects can be very severe. I'm making sure I go into this with my eyes wide open. Thanks!

Thank you, Laurel!

Anon -- Great information! Thank you so much for sharing. I'm looking forward to the report on the 17th. If my doctor hasn't stumbled across these sites himself, I will lead him in that direction. I appreciate the support!

Shelli,Hello and thank you for your blog! Its wonderful. I have a doc that wants me tested for XMRV. I am just so unsure... what if I'm negative? What if I'm positive? In some ways, I think being negative would be harder than being positive...

I was told of a Dr. Paul Chaney from North Carolina that has had some success treating XMRV. His number is: 828-274-6665. I don't know what treatment he uses or anything aobut him.

Where did you have your testing done? If I've said things that arent appropriate for blogs, please let me know as I've very new to this world.

Shelli, Unless you have ME/CFS, a similar illness or one that is terribly hard to diagnose, I don't think many could understand how hard it is and how much courage it takes to walk into a new doctor's office, with determination and realistic hope. Applause to your courage and to your attitude of keepin' on with your personal journey for treatment and how you speak out for all of us!

About Me

I am a 46 year old stay at home mom. I have been married since 1988 to the world's best husband. We have six wonderful children. My husband and I are starting our own small business together. I have had Chronic Fatigue Syndrome since about September 2006. It's such a strange disease (illness? condition? ailment?). I wanted to create a place where I could come and write about what it's like to deal with the challenges of living the CFS life. I honestly believe that sometime, somewhere, some doctor is going to magically tell me, "Oh, I know what this is!" and I will be cured. Until that time, I'm hoping to learn something about myself and maybe help others.